Minutes of Advanced Prostate Cancer phone-in meeting 22 March 2013

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Minutes: Advanced Prostate Group Meeting Friday 22 March 2013

 

A phone-in meeting for men with advanced prostate cancer is held on the fourth Friday of each month (Christmas one week early, January one week late). People who care for a man with advanced prostate cancer are welcome to listen in.

 

These Minutes of the Teleconference are general in nature and not meant as advice. You must consult with Health Professionals for advice.

 

APOLOGIES not available online

 

Chairman Bruce introduces and welcomes new member Man #8.

Man #8 was diagnosed in England in July 1998 in Lancashire with a PSA of 51,with Metastasis in the two lower vertebrae. At that time he was going to the loo a lot. Went on to Zoladex (a monthly 3.6mg implant until 2002). Moved to Australia and in October 1999 he saw Dr John Yaxley who was a bit dubious about the metastases story so he had further bone scans. A new diagnosis of the spine was Paget’s Disease. In 2002 he went on to three monthly Zoladex implants with a PSA of 0.09. By 2005 his PSA was on the up and treatment included Cosudex for some time. Man #8 said he didn’t like Cosudex that much. 2007 saw the PSA rise to 13 so the treatment included Cosudex again which saw the PSA fall to about 8 and kept it there. At the end of 2010 the PSA was 18 and 2011 it was 33. In September 2012 he went onto Degarelix (Firmagon). Man #8 had the Degarelix (Firmagon) injection in the side of the stomach similar to the Zoladex. He is not keen on the Degarelix (Firmagon) as it makes the area of injection sore and uncomfortable and didn’t bring the PSA down. Today his PSA has risen to fifty five(55). At his request he has now gone back to Zoladex. Man #8, who is eighty seven (87) in July, is having Trans-Urethral Resection (Rebore) on the 19th April and then later possibly Radiation on the Prostate. Man #8’s wife is concerned about the operation as the cancer may spread if exposed to air. Chairman Bruce assures the group that it is a myth that cancer is stirred up and spread during an operation and exposure to the air.

 

Man #8 was asked if he had Zoladex and Cosudex concurrently. His reply was he had Zoladex and Cosudex concurrently for many years. It was suggested he may not be able to stay on Cosudes forever. 

Man #1 Confirmed there was evidence that Cosudex fights the cancer for quite some time, then it becomes a food for the cancer, so it is not just your doctor. Cosudex can be replaced by other antiandrogens like Nilutamide and each can give you a few more months.

 

Chairman Bruce introduces and welcomes Guest Speaker Bridget Kehoe. Bridget is a Nutrition and Diet Spokesperson and Helpline Operator for The Cancer Council Queensland and has worked there for a number of years. Nutritionists are responsible for helping people increase their physical and mental health through foods or special diets. They have extensive knowledge about nutrition, how it impacts people, and how it can prevent or treat certain illnesses. Bridget is here today to talk about the link between Prostate Cancer and nutrition.

 

Why is nutrition important?

A healthy diet is important for everyone but especially so for people diagnosed with cancer and there are some main reasons for this.

 

Eating well can help you to:

1) Maintain a healthy weight regardless of whether you are losing weight or gaining weight.

2) Good food helps to supply the body with the nutrients for repair and healing, so that is important.

3) So those two items help you cope better with treatments. If you lose too much weight you may not cope as well with your treatment. Eating well can help you to continue treatment more easily. 

 

How cancer affects nutritional needs in a few different ways

 

Different eating habits and behaviours

• You may eat more or less than you used to

• Some foods may taste less appealing so you don’t like to eat particular foods that you once liked

• Existing dietary problems may be aggravated by cancer treatment e.g. diabetes, irritable bowel

 

Changes to the way your body uses nutrients

• Due to the cancer itself, but more likely treatment or medications you are on

• Some people may experience high blood sugar (hyperglycaemia) which can be caused by certain medication

• Some people are more prone to Vitamin or Mineral deficiencies. Men who are on hormone therapy may have a higher risk of Vitamin D or Calcium deficiency which can cause bone problems related to that.

 

Nutrition during three most common different kinds of treatment for this group

 

Chemotherapy

• Targets cells that divide quickly, and while that is good it also includes other cells e.g. lining of mouth, throat, oesophagus, stomach and even the bowel. 

• Common side effects are nausea, vomiting, fatigue (feeling very tired) and weight loss.

 

Radiation therapy

• Side effects are localised to treatment area so it depends where treatment is. So if it was to the prostate gland, Treatment to pelvis may cause constipation or diarrhoea.

 

Hormone therapy

• There is a very wide range from mild in some men to very serious side effects in other men.

• Some of the side effects include nausea, vomiting, weight gain, bone loss which can lead to the bones becoming more brittle and breaking or hot flushes.

 

Nausea and vomiting Can be particularly hard one if you are losing weight because you really don’t want to eat and when you do eat you can throw up what you have eaten. A few tips for overcoming some of those side effects through food. 

 • Eat small amounts often and slowly. Some people if they are sick they may not want to eat but that can make you feel more unwell. So it is good to have some food in your stomach even if it is only small portions. 

• Stay away from cooking odours; be in another room while food is being prepared 

• Drink beverages cooled or chilled as this can help with how appetising they are.

• Always eat sitting up if you can as lying down can bring on more nausea. Stay sitting for thirty minutes after eating, before you lie down.

• Try to eat plain foods rather than spicy, fatty, greasy, chilli or rich foods

• Some studies have shown ginger may help – try it in cooking, a tea or cold drink

 

Fatigue can be a really big problem

• Stay hydrated – dehydration worsens fatigue

• Include some protein in your meals. Protein foods include meat, grains, eggs or fish. This helps you body build cells.

• Choose more whole grains. Wholegrain bread has more protein compared with white bread. Whole grain cereals and Wholegrain bread have more protein. 

• Check to see if you are getting enough energy (kilojoules) from your food. This can be hard if you are sick or unwell. Some people take nutritional supplements like Sustagen or Ensure which can provide more energy by drink rather than having to eat something.

Light exercise even if it is a small walk around the house if you are sick can help. 

 

Weight loss

Can be a problem for people having Chemotherapy if they are having nausea and vomiting 

• Eat small, frequent meals throughout the day

• Choosing foods high in energy (kilojoules) and protein

• Add protein and energy to foods and drinks. This is a bit different to previous conditions. You might add cream to food or have full cream milk instead of skim. 

• While it is important to drink beverages, have them between meals instead of with meals because you do not need to fill up on water and then not be able to eat a meal.

 

Constipation more related to radiation but can happen with Chemotherapy

• Drink lots of fluids e.g. water, milk, juice (about eight cups per day)

• If you have gas avoid cabbage, cauliflower, broccoli, beans

• Try to increase the fibre in your diet (this needs to be done gradually) fibre is found in fruit and vegetables and wholegrain foods 

• Be more active, moving around can help your digestive system to process your food. If you are up to it a walk around the block is even better.

• Eat plenty of fruits and vegetables

• Talk to your doctor about fibre supplements or laxatives if needed. They are not always suitable.

 

Diarrhoea

• Drink plenty of water as it does help as you lose a lot of fluid.

• Eat small meals throughout the day (eat six smaller meals rather than three larger ones).

• Try to eat low fibre foods such as white rice, noodles, white bread and potato

• Peel fruits and vegetables before eating and cook well, don’t eat them raw.

• Eat protein foods such as chicken, lean meat, fish or eggs

• Some people may need to avoid dairy foods, except yoghurt which is usually okay. People who are lactose intolerant can often eat yoghurt. 

• Do not eat raw vegetables or fruit, or high fibre foods such as wholegrain bread 

• Talk to your doctor about medications. Gastro stop is one that is often used.

 

Bridget mentioned here the details of: The Continence Foundation of Australia which promotes Bladder and Bowel Health. 

The National Continence Helpline is Ph 1800 33 00 66

www.continence.org.au 

If you contact this number they can give you a lot of information on food and medication. If you have a lot of bowel or incontinence problems they help with where to purchase sanitary products ect.

 They also have a very good book for people with Constipation or Diarrhoea issues. It is called Looking after your Bowel – a guide to improving bowel function. This book includes a food chart at the back to help you choose foods to eat if you have either Constipation or Diarrhoea.

 

Weight gain can be a problem if you are on hormone therapy. This is the opposite for people who are losing weight.

• Fill up on vegetables, fruits, whole grains and beans as they do not include a lot of energy.

• Make sure meat is lean, chicken should be skinless and choose low fat dairy or skim milk

• Choose healthy snacks between meals so you do not get hungry like a small serving of nuts, dried fruit or crackers with vegemite or a piece of fruit.

• Remember drinks count towards your energy intake so choose water or low fat milk

 

Bone loss or getting problems with brittle bone can also be a problem if you are on hormone therapy.

• While this is not a food one it is very important. Always talk to your doctor about starting some weight bearing exercise. Weight bearing exercise can be using your own body weight or other weights that you add. 

• Eat a healthy diet with a wide variety of foods

• Limit caffeine found in coffee and cola drinks (caffeine can cause you to lose calcium from your bone), too much salt can make you go to the toilet a lot and you may lose calcium that way and soft drinks

• Eat foods high in calcium (low fat dairy, leafy green vegetables such as cabbage, spinach or broccoli, soy beans, baked beans, dried fruit & fish if you have it tinned the ones with the bones included are best)

• Talk to your doctor about Vitamin D and calcium supplements – they will work out the dose you need. Hormone therapy can cause deficiency that is why supplements may be necessary, but please talk to your doctor if that is an issue for you. Supplements are best taken in the morning with your breakfast. Studies show absorption is best if taken at this time of day. Try not to have coffee or salt or soft drink at the same time. A bone density test is a good idea.

• Avoid smoking and limit alcohol as they can hinder calcium absorption. 

 

Nutrition after treatment

• If you are not experiencing ongoing side effects you are encouraged to follow the same recommendations given to the general public for cancer prevention

• Focus on body weight, physical activity and healthy diet

Nutrition for Cancer Prevention

1. Be as lean as possible within the healthy weight range

2. Eat plenty of fruit, vegetables, wholegrain cereals, grains and legumes

3. Limit fatty, salty and sugary foods and drinks

4. Limit red meat, a few times a week is fine and avoid processed meat such as salami and sausage deli meat.

5. Limit or avoid alcoholic drinks

 

Hints for modifying recipes Add fibre, fruit or vegetables

• Replace meat or chicken with cooked or canned legumes (beans, peas)

• Add extra vegetables (fresh, frozen or tinned – salt reduced)

• Use wholemeal flour, wholegrain pasta, brown rice or other grains

• Add chopped nuts

• Add fresh, tinned (in natural juice) or dried fruit

 

Hints for modifying recipes

Use less saturated fat

• Swap butter for margarine or oil

• Use low fat dairy products

• Use smaller amounts of high fat products

 

Use less sugar

• Use fruit for sweetness instead of sugar

• Reduce the sugar by one third (this generally won’t affect the result)

 

Use less salt

• Use low salt or no added salt products

• Use small amounts of high salt products

• Add flavour with herbs and spices

 

Alternative therapies

These come up a lot. The minute someone is diagnosed with cancer people are recommending all sorts of things on what they think is the best thing to do. It is very important to separate fact from fiction and remember some will be trying to take advantage of you.

1. Read closely: be careful when they use words like breakthrough, never seen before and that kind of thing. They may use testimonials rather than data.

2. Get the whole story: so if you see a report on the TV on in the newspaper see if you can find the study that report came from because sometimes they do not report the findings exactly. 

3. Be wary of easy answers, anything that sounds too good to be true usually is too good to be true.

4. Go to reputable sources like Memorial Sloan Kettering Cancer Centre or ask your doctor

 

• Memorial Sloan Kettering Cancer Centre: Is a Cancer Treatment and Research Institution, the world’s oldest and largest private cancer centre. www.mskcc.org and type prostate cancer in their search box

 

Memorial Sloan Kettering Cancer Centre – Herbs and Botanicals

www.mskcc.org Type herbs and botanicals in their search box for further information,.

 

• American Institute for Cancer Research: Fosters research on diet and prevention and offers educational services. www.aicr.org 

 

• Macmillan Cancer Support: A to Z on detailed information about specific cancers. www.macmillian.org.uk 

 

• Diet and Cancer Report – Note (your secretary typed diet and cancer report into the search engine but could not get the local pages to open. However you could try Diet and cancer: the evidence : Cancer Research UK in you search engine as there is a lot of information there).

 

• Australian Dietary Guidelines 2013 – The guidelines were posted in the Lounge Forum on the Advanced Prostate Cancer Website on Tuesday 26 March 2013 

 

 CCQ booklets

 

• Understanding Nutrition – This booklet is available for free on the Advanced Prostate Cancer Website (JimJimJimJim.com) and can be downloaded as a PDF file. Go to the black bar near the top of the page and click on the Links Directory. When that page opens you need to click on – Other resources- clinical trials, books, guidelines, miscellany. When this page opens the Book – Understanding nutrition, Cancer Council Queensland is at the top of the page. Click to open your options to read or download the booklet to your computer. Or you can call Cancer Council Helpline 131120 Monday to Friday 8am to 6 pm.

 

• Complementary and Alternative Therapies – This booklet is available for free by typing Complementary and Alternative Therapies cancer council Australia in your search engine and can then be downloaded as a PDF file. Or you can call Cancer Council Helpline 131120 Monday to Friday 8am to 6 pm.

 

Exercise is important and I have mentioned it a few times today.

• Some universities offer free or low cost public clinics, or may specialise in health conditions. Sometimes it may be one on one or in very small groups. Health Clubs can be quite expensive.

• UQ currently has a prostate cancer study, for details contact:

Exercise Clinic for Prostate Cancer Survivors at UQ

The Exercise Clinic for Prostate Cancer Survivors offers free health assessments and exercise sessions to prostate cancer survivors to improve health outcomes. 

The program involves 1 hr sessions per week for 7 weeks, including:

Preliminary and final health assessments measuring aerobic fitness, body composition, blood pressure, flexibility and strength

A personal exercise routine and supervision for 5 sessions. 

The service is offered as part of the professional development for 4th year Clinical Exercise Physiology students under the supervision of experienced staff.

Kate Bolam

Ph: 07 3346 9710

Email: k.bolam@uq.edu.au 

 

Chairman Bruce has to leave the Telephone Meeting for another appointment.

 

Man #2 My cancer is metastatic and I am on Zoladex, Cosudex and Zometa and have lost taste buds, have you come across that before.

 

Bridget I certainly have. More commonly people having radiation to the head or chemotherapy have that. Depending on your health otherwise you could try things with very different flavours to what you normally eat. You could try more herbs, or chilli or something like that. It would not be suitable if you had diarrhoea for instance. Some people find if things taste too sweet you could had some lemon juice and that helps. If it tastes really salty you can add sugar or honey. Other people find meat can taste strange is that something you have found?

 

Man #24  I just find some dishes tastes very bland. There is no unpleasant taste just no taste.

 

Bridget Try adding things like garlic, chutney, pickles or cheese. You could have some of those sorts of things on the side for yourself while you are eating because others may not enjoy them. Drinking through a straw can be used for those who want to avoid taste.

 

Man #11 The last week or so a glass of water does not taste like a glass of water, it appears to taste like it is contaminated with milk. I found a type of growth on my tongue the other day so I not sure if that has anything to do with it. I also had radiation recently, just over a week ago, on the upper spine. 

 

Bridget If you have radiation near your mouth it can kill off those cells on your tongue where you normally taste with. If it is caused by the radiation, once you have completed radiation, the cells will recover and normal taste will return. You could also try mineral water with a bit of bubble in it or adding some other flavour to it like a juice or fruit which may help.

 

Man #13 A lot of the men have a glass of pomegranate juice each day, it has been suggested a tablet may be an alternative. How many tablets per day are required to replace a glass of pomegranate juice. 

 

Bridget I guess it depends what you are looking for out of it. Often there unknown things a food or drink may do when it comes from the whole food. If a tablet is made they tend to take out only certain parts. However if you are drinking the juice or eating the fruit you get the whole thing. Things are studied and it is suggested this causes something but you don’t always know what part of it causes it or it has to be the whole thing. So for most people it would be better to have the whole food or the juice. Most of the studies I have seen are with the juice not the tablet. 

 

Man #1 The studies suggest the POM pomegranate juice is beneficial and Dr Snuffy Myers recommends the POM capsules because they have less sugar but they are not available in Australia. 

 

On Calcium when to take it is a little complex, if you are only taking a single dose it seems night time is best. If you are having a lot of calcium half in the morning and half in the evening is not as good as having one third in the morning and two thirds in the evening is best. Calcium, according to Dr Myers is more available to the body taken as Calcium Citrate not the more Calcium Carbonate. The Calcium to be taken as a separate tablet such as Citracal rather than have it combined with Vitamin D, so your doctor can adjust the Vitamin D to match your needs, which may change. 

 

Looking for extra protein can be helped by using a Whey Protein Isolate.

 

Bridget Agreed that Whey Protein in good for people not trying to add weight while Sustagen better for people who are losing weight or at risk of losing weight. There is still a little bit of debate just exactly what the best level of Vitamin D should be and research is still trying to work that out.

 

Man #1 Very high doses of any supplement can prove to be dangerous.

 

Man #8 made the observation that in Australia we do not eat enough offal such as kidney, heart, liver and that sort of thing and I do believe that is a valuable source of vitamins. 

 

Bridget it does include things that are good for you however people here don’t eat that much of it.

 

Man #2 asked about green tea and green tea capsules, which is better for you?

 

Bridget I tend to lean towards the real thing. Some times when you take concentrated amounts of things they can have adverse affects.

 

Man #11 asked about ginger for nausea as he has to go on chemotherapy. 

 

Bridget ginger certainly does help some people, but not everyone, and we don’t know why. It does not have to be straight ginger. It can be a ginger tea or a cold ginger drink you don’t have to eat the plant itself. People sometimes take it for car sickness or motion sickness. People on ginger supplements, if they have problems with blood thinning or having surgery, they should not be on those supplements. 

 

Man #12 I have been drinking three glasses of pawpaw tea every day for the last four years. Does anyone know about pawpaw tea, which I make out of the fresh leaves or stems of the pawpaw that I grow in my organic orchard here? I have six leaves and stems that I chop up and boil in four litres of water. I then let it cool, strain it and bottle it and that lasts a week. 

 

Bridget I am having a look to see if there are any studies done in humans. There has been some on animals such as mice. So if they get good results there they will move onto humans. Memorial Sloan Kettering Cancer Centre does have links to studies that have been done on Asian Pawpaw. Go to www.mskcc.org Type Papaya in their search box for further information.

 

Man #8 said he had been drinking three cups of tea made on dried pawpaw leaves for the last twelve years. He has no opinion on if it has any effect at all.

 

As there were no further questions to Bridget, Jim and the men thanked Bridget for her excellent presentation. 

 

Man #6 Reported a bone scan ordered by his GP and taken to the Radiologist showed his cancer has spread to six ribs. The Radiologist advised he could not help in this instance. It was suggested to him by the radiologist to go back onto hormone therapy. 

 

Man #6 said he spoke to a sixteen year old boy recently who had a brain tumour, and one of the things this young man said was “when you wake up in the morning it is your choice to be happy or not”. It is probably good advice for all of us.

 

The Meeting closed at 11.05am

The next Teleconference is on Friday 26 April 2013

 

Calculating Healthy Weight

Calculating BMI:

BMI = weight/height x height (weight in kg, height in m)

So, BMI of a 2m high man who weighs 100kg 

= 100/(2 x 2) = 100/4 = 25 (verge of overweight)

 

Measuring waist circumference:

• Measure directly against your skin

• Breathe out normally

• Make sure the tape is snug, without compressing the skin

• Measure halfway between your lowest rib and the top of your hipbone, roughly in line with your belly button

*BMI and waist circumference are average measures only so are not always accurate for people from different ethnic backgrounds, athletes or people with different builds

 

BMI Classifications

Less than 18.5 Underweight

18.5 – 24.9 Normal

25.0 – 29.9 Overweight

More than 30 Obese

 Waist Circumference

 Men Women

Healthy weight Less than 94 cm Less than 80 cm

Increased risk More than 94 cm More than 80 cm

Greatly Increased risk More than 102 cm More than 88 cm

 

These Minutes of the Teleconference are general in nature and not meant as advice. You must consult with Health Professionals for advice.